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Brilliantly put and the last sentence reminds me of @Trish views.

Yea but I think we need indicators of whether interventions work E.g. these indicators (increased hours of employment, return to education ---) showed that PACE was a sham - so we need something. What's the alternative re indicators of whether an intervention works?

Department for Work and Pensions (DWP) funded PACE and I think we have to accept that "cost", to the taxpayer, will be part of the appraisal of whether to fund a particular study --- ME/CFS costs £million --- therefore, funding this study makes sense. I think the fact that this research doesn't...

If they actually did a proper study using objective outcome criteria: electronic activity monitoring - actimetry/actigraphy; ability to return to work/study; ability to do normal household activities; and GET was shown not to work then, in a real world context, it is irrelevant. OK it might...

Think MRI is considered to be more reliable than PET so anything based on MRI seems likely to be more reliable. With PET you basically artificially create a signal i.e. by using a ligand which attaches to what your interested in and produces the signal. With MRI the signal is a fundamental...

Perhaps I haven't made myself clear, if the Long covid groups (people with Long covid not the APPG on covid) challenge any proposals to fund (Long covid) research, which uses the flawed PACE approach, then there's a win for the ME/CFS community - why? Because the opposition to these flawed...

Hi just noticed that there's an APPG on coronavirus* and was thinking that this might be a useful vehicle to put pressure on the Department of Health and Social Care (which funds NIHR) regarding the funding of low and very low quality research into ME/CFS. The same people who carried out these...

Here's an extract from @Trish post re Brian Hughes article* "York researchers, commissioned by NICE to review the research evidence on which they had already published a review of the same trials full of caveats/limitations in JAMA several years earlier"...

Hopefully the NICE review - but try to make funding this crap politically unacceptable.

Should be the end of the road for this line of flawed research but that may take some lobbying of Secretary of State for Health and Social Care (funds NIHR), public accounts committee, making it unacceptable to fund this crap - social media.

Precisely - any academic who can bring in money is welcome and no doubt held up as a role model for their colleagues --- who gives a s--t if it's crap.

Yea the Secretary of State for Health and Social Care funds NIHR - The response to this Parliamentary Questions shows the deflection strategy the Secretary of State/Minister uses "All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the...

Yea it's cheap s--t --- and it make it look as if the Government is doing something and by manipulating your audience you get them to give you a positive review in the questionnaire - you just don't look at school attendance, ability to function at school --- all of the things which tell an...

Yea this would strengthen the case to fund the study --- will provide treatment options for XK people --- hopefully, all blown out of the water by the NICE review.

Can't see how NICE could reasonably depart from the findings that these studies are "low and very low" quality - so they can't be used to promote treatment.

Yea the decision makers aren't the Paul Garner's they're the NIHR & the Minister who funds NIHR [Secretary of State for Health and Social Care]. From memory Barrack Obama, in his autobiography, told how he threatened the Chinese & Brazilian leaders - I've got a microphone too --- so if you guys...

I work in a devolved UK administration, at a junior level, on planning policy. I wouldn't like to be recommending funding a "low or very low quality" research project [unblinded and subjective outcome criteria rather than objective criteria - actimetry]. If the Minister wanted it done then the...

Thank @Sly Saint here's an extract from the study protocol "4.11.3 Primary outcome Our primary outcome will be disability measured using the Physical Function Scale (SF-36-PFS) measured 6 months after randomisation." https://www.journalslibrary.nihr.ac.uk/programmes/hta/14192109/#/ - Protocol 23...

I've only skimmed this but it seems like something you could ask via a freedom of information request. I can't see it being permissible to refuse to release documents in this context.

Could you add actimetry i.e. objective measurement of physical activity to this study (I assume the study has commenced) http://www.bristol.ac.uk/academic-child-health/research/research/cfsme/fitnet-nhs/ Issue is that, since it relies on questionnaires to assess outcome then, it will presumably...